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Friday, December 6, 2013

What I Wish I'd Known...

Sensory Processing Disorder is a tricky, tricky thing. We have lived with it in our home now for almost eleven years. While I am by no means an expert (as evidenced almost-daily in this house), I have been around the block enough now to know that there are many things I WISH I had known--or at least been warned about--when we were just starting out on this journey. It's my hope that I can be that voice in the back of your head (or one of them) that can offer you some words that can help, or comfort, or, more likely commiserate...

1. This is NOT your fault. Really. Or, truthfully, maybe it is. No one knows. And so that means that NOWHERE did you mess up enough to knowingly make your child have these issues. Yes, I ate red dye while I was pregnant. Maybe you drank a glass of wine before you knew you were. There was always that crazy sister of your dad's that everyone talked about, right?

It doesn't matter. As they say in Kindergarten, "you get what you get and you don't throw a fit". This is the reality, and SPD is a part of it. Stop worrying about what you might have, maybe, possibly, done wrong somewhere in the recent or distant past. It's not worth it, and it will take up extra energy that you need to use convincing yourself of number two and number three.

2. You are NOT making this up. I know, I know. If your child is anything like mine, you may have three days in a row of sanity that make you doubt yourself. Did you really see what you thought you saw? Maybe you were over-reacting. Maybe it was just a bad day. After all, your child is fine for everyone else, right?

I really think that self-doubt should be a trademark for SPD parents. One of the hallmarks of SPD, after all, is the unpredictability of it all. We do have good days and bad days with our kiddos. In the past, the good days made me doubt that there was really a problem. Now, the good days just make me wish for more good days in a row.

Stop doubting yourself. Because, ...

3. You are NOT crazy. Oh, Momma, I've been there. I've been in a doctor's office with a screaming 2 year-old, trying to convince the doctor that this screaming tantrum is not like everyone else's two year-old screaming tantrum. I've been looked at like DCFS is on speed dial while I've had to restrain my four year-old at the park. I've heard those conversations between friends while they didn't know I could hear. (Or maybe that was just the happy people that live in my mind. Maybe I really AM crazy!)

No, joking aside. You are not crazy. You are a brave, strong, fierce Momma lion, and you fight for someone to listen to you and to help your child and your family. People will think you are nuts.

I promise you that you are not.

4. Some days are going to be really, really, amazingly hard. With a capital, shout-it-out-to-the-world, H. Raising my ten year-old is hands-down, the hardest thing I've ever done. She exhausts me, wears me down, makes me so weary that I can't make another decision to save my life. So much of my brain power is filled with "what if" scenarios, or ways to make transitions easier for her, or worrying about when the next shoe is going to drop.

It's so very tiring. It makes me want to quit. In fact, I have quit, many, many times.

But we still have to get up the next day. And we do, because...

5. Some days aren't. When my Firefly is on her game, she is a light. She is funny, caring, and generous. Her spirit is so big that her body can't contain it. She has so much to share and talk about and love. And it builds me back up. And sometimes we have a few of those days in a row, and it's all worth it. And the no-good, horrible, very bad days fade away.

6. Not everyone will get it. In fact, very few will. Find someone who does. Break away for dinner, or for a drink, or chocolate. Make sure you have someone who you can call and cry to when you have locked yourself into your closet and just. can't. take. it. anymore.

It will help so very much. I promise.

And if you haven't found your person yet, call me.

We can cry in our closets together. I have been there, trust me.

(And thank you ever so much, Liz and Chrissy!)

7. You will lose some friends. Mostly because of number six. When people don't get it, they tend to not want to get it. They think that you are making things up or just a bad mom (number eight). Remember, though? That kind of thinking is not true.

Some people won't understand that their last-minute changes of plans (continually) mean that you finally have to stop making plans with them in order to maintain sanity in your home.

Some people don't want to offer playdates when you can't reciprocate.

Some may think the diet you've put your children on is bizarre.

Some may think it's just too hard to be your friend.

Not everyone thinks that way, Momma. Hang onto those you find who get it, and stop worrying about the others. They have been blessed to not have to get it. Your blessings are coming in another form.

You have enough going on to have to worry about. Choose your battles, sister.

8. You will think you are a bad mom. Maybe you should have picked up on those clues earlier. Maybe you should have tried X, Y, or Z therapy before. Maybe you lost it and yelled and screamed like a toddler because you were at the end of your rope. Maybe you slapped your child. Did you say things you shouldn't have said? Did you lock yourself in your closet for that cry a little too long? Are you a bad mom?

9. You aren't. Listen to me--you are human. You are trying your very best, but sometimes you fail. It's OK. You know why? You get up and try again. You love your kiddo, even when it is impossible to like them.

You are human--you are not God. You are not perfect.

It's OK.

10. Your child was given to you for a reason. It may be a long, long time before you can see it, but it's there. God doesn't make mistakes. He knew you were the perfect Momma for this job, just as He knew your child was the perfect child for you. It's hard to wrap your mind around, and some days it's hard to acknowledge.

But try to hang onto that. God doesn't make mistakes. He knows what He's doing, and our job is just to trust. But won't it be just wonderful one day to be able to ask Him, "just WHAT were you thinking?!"

Are you a Momma of a kiddo with SPD? What else would you add to this list?

Thank you! I am still trying to decide if my 11 year old dd has SPD. I know she is Psychomotor & Emotional Overexcitabilities. I always thought I was just a bad mom because none of the other kids I know acted like her. But the more I learn about giftedness, 2e, and SPD are starting to change my mind.

Thank You so much!!! My 33 mnth son was just diagnosed with spd and after 2 drs telling me "this is just a 2 yr olds behavior, they dont have impulse control yet" l am so happy as weird as that my sound that I didn't give up, I being a first time mom followed my instincts! Now for the 2nd step therapies...(only has 3 mnths before he ages out)So then what...could u share please what did u do or r doing? Is ur child in general ed classroom Sorry I have a million?s But i truly wanted to say thanks!!!!!

I'm so glad this was helpful to you! I know exactly what you mean about being relieved to have a diagnosis--but overwhelmed, too, right? We have tried all kinds of therapies over the years--just about everything you hear of, really. Right now, my girlie just turned eleven. She is homeschooled and has been since first grade. She has just begun OT again, and sees a counselor and is on a medication. What have I found that helped US the most? Changing her diet--big time. I can't seem to find the strength to go gluten and casein free, but we have removed all dyes and almost all preservatives and that made a huge difference. Counseling and meds also helped. For us, OT, behavioral therapy, chiropractic, DAN doctors--none of those were big successes. Also, finding other mommas who understood is just a huge relief. I'd love to keep in contact with you as you go through this. I'm here anytime, lol!

Thanks again!! We have a play base assessment end of Feb for preschool... I'm so nervous! His ot doesn't think he will qualify b/c he excels academically but his behaviorist thinks he will b/c he cant control his anger.

If u dont mind me asking why have u decided home schooling? I'm going to see if I can start changing his diet... but he's so picky lolIts such a blessing to have found ur blog!!!

Make sure you stand your ground and let them know there is more to school success than academics. We decided to home school for several reasons, not the least of which was the flexibility that it offered our family. My firefly did well in school (it was only k and 1st grade), but she was completely a train wreck when she got home--from being so on edge all day. Homeschooling now gives us the opportunity to make dr. appts and therapy part of our school day, adapt our schedule to what works best for her to be successful, and give ourselves ALL the chance to take a break when we need to.

Bless you. I'm so glad you found this and that it helped. The doubts are so so very stinky, and I'm so sorry you have to deal with them. Prayers are going out for you. I hope today, at least, was a good day for you.

So nice to be able to breathe when I read this. I have felt crazy, overprotective, neurotic even. However, visits to the physical therapist and occupational therapists have been so validating. And nothing is more validating than this...

OMG thank you so much for this! Being my little monkey's mom is the hardest thing I have ever done and I taught kindergarten for an entire year in a room with no windows and only 1 door! Potty training alone almost put me in a mental institution! Anyway...thank you again. I don't have that phone call person and my husband isn't really here enough to understand AT ALL so this really, really hit home.

Hey, Molly! Your kindergarten adventure made me giggle! I'm glad I could help, even just a little. I would love to help be your person--you can always email me during those rough, crying in the closet, times if you need to. Hugs! (childrenfirstei@yahoo.com)

OMG I cannot thank you enough for this! Parenting my monkey is by far the hardest thing I've ever done and that includes teaching an entire year of kindergarten in a room with NO WINDOWS and only 1 door! Potty training alone just about sent me right over the edge(and we still haven't overcome the #2 part yet). As a mom with no phone-a-friend available I true lay appreciate this. My husband is in the Air Force and almost never home. He really doesn't understand at all what we are going through or what an entire week 24/7 is like so it is nice to, as you put it, be reassured that I am not overreacting, crazy, or imagining it. I don't know you but I feel like you know me and that somebody.somewhere.understands. <3

I am the stepmom to a 7 year old. My husband is a truck driver and barely home. My baby girl's bio mom lost custody of her a year ago due to her drug problem. I am a 21 year old who all of a sudden was a full time mom to a 7 year old. Almost everyone I know had me convinced that it was just because I was so young and couldn't handle it. There were countless times that I would just lose it. One in particular, I had just cleaned the kitchen and Baby Girl had not been listening to anything she'd been told all day. I gave her a drink to go with supper and the first thing she did was drop it in the floor. I went outside on the swing and cried for an hour...She was just diagnosed last week and we are going for her first visit with her therapist tomorrow. I am SOO glad that we finally know how to help her. I felt so helpless! Even though we haven't found out what will help her most yet, we know WHY she does the things she does. Its like the weight of the world has been lifted off my shoulders.

Bless you for working so hard and taking this on. You are a special lady, and she is so lucky to have you! I am praying for you and that therapy will be helpful--for her and for you. You are most definitely not alone.

Thank you so much for this. My 3yo daughter was diagnosed four days ago with a spd and I am trying to wrap my head around it all. This is just what I needed to read right now. Especially that last point.....i keep saying that to myself in the difficult moments to get me through. So a very big thank you.

Oh, Stephanie, thank you for your kind words. I hope that mine helped you, and know that I am adding you to the prayer list! I hope the diagnosis helps you to find professionals who are helpful for both of you.

Your blog is absolutely amazing, thank you so much. My youngest has just been diagnosed with Sensory Processing Disorder and for the longest time I thought that I had been doing something wrong. After the diagnosis and after I stopped blaming myself for something gone ary in my son, I have accepted the challenge that is my amazing son. We too live in Florida, we are in Southwest Florida and low and behold the one thing that makes him go into sensory overload the most is the beach. Some days are unbearable but other days, like today, are wonderful and I count my blessings on these days when I don't have to breakdown in the bathroom because I can't take it any longer. Thank you thank you thank you for sharing this blog. I will definitely be a regular reader <3 It's wonderful to see a family that has been dealing with SPD for years. It shows me that everything is going to be just fine

Ha! I'm so tickled to hear that our story gives you strength! Please let me keep reading that when I am having my bathroom moments!! It is going to be OK--we're all going to make it through to the other side--and be so very blessed when we get there. It's just hard sometimes to keep our eyes on the prize! (I think it's because of the tears--or the wine.) Nice to meet you, Brittany!

Thank you for this post. I have a 9 year old who was just diagnosed. It is nice to hear what others are doing and that I am not alone or crazy. I am trying to figure out how to explain to family and friends when things are bad that isn't just "bad." It is difficult. It breaks my heart that people just assume they are naughty. The first psychologist we went to said she was just being evil. A hard road ahead, but at least we know what is wrong! Thank you for helping make my page easier. I will definitely be a regular reader (especially when I saw your 'Noles post! I am class of '96 living in GA)

Oh, Marci--it's finally been a good year for our boys, hasn't it? Do you make it to any games? We finally broke down and got some tickets for next year...The explanations are just so tough, aren't they? And I find myself trying to figure out who deserves the long vs. quick explanation. As Firefly gets older, that gets tougher. She has her own opinions now on what she wants the world to know!

Shame on that psychologist! I'm so sorry you had to go through that! Just what NOT to tell a struggling Momma! What are you all doing now that you have the diagnosis? Any treatment plan? I'd love to hear what's next on the agenda...

After my 4yr old suspected spd kiddo (in the process of seeing paed, ot and speech therapist for diagnosis) having the biggest meltdown at a family members house and hearing the "spoilt brat" comments...I really needed to read this. Trying to empower myself with knowledge and coping strategies (for me and my son) so that I can hopefully educate the extended family. Thank you for this! I know im not alone and im not mad :)

Nope, you're just crazy like the rest of us, lol! I've even found myself calling my own SPD kiddo "spoiled". It's such a hard road, sometimes, but I hope it helps to know that you're not alone. Hang in there!

Thank you so much for taking time to be a help and encouragement to spd parents. I cried when I read your post bc it's helps me to realize I'm not alone in this and not to feel so guilty when my patience gets a little low especially during my daughters frequent meltdowns. Thank you for your insight

I just read the list of 10 things & appreciate it very much! We have had some tough days recently with our son who is 8 with SPD. I wonder if we are doing the right things. Tired of well meaning friends saying, give him meds or put him in counseling or questioning our diet. The good days are bitter-sweet because sometimes it breaks my heart he can't stay that way but yes I love to see the whole him.

I have been doubting my parenting... and then feeling great about it... and then doubting it... (ha!) for 3+ years now. My son is 6.5 and we are having him evaluated for OT in a week. I would like to know more about your family's diet. Do you have a blog post about it already? Thank you for this list. It was a great comfort!

I don't have a post about our diet, but have added it to the list. Mostly, Firefly has been off of dye (primarily red) since before her second birthday. I am also trying to cut out preservatives and eating as natural as we can practically afford to do. I haven't been able / had the energy to try gluten free or casein free. I'm exhausted as it is, lol! Thank you for commenting!

Oh my gosh. Thank you, thank you, thank you for this. I felt like you were speaking directly to me in every single one of these lines. I actually have tears in my eyes because we've been dealing with this for almost 8 years and I've read endless books, blogs, articles...but never have I felt like someone "got it" until I saw this. Thank you.

Thanks for telling me what I really needed to hear this morning. It was a rough one, with my sweet little man extremely overtired (you know SPD kiddos and their often psychotic sleep habits), cold, hungry, and absolutely dreading his second day of school. Some days I absolutely feel like I'm the one who needs a dark closet corner to hide in (it works for him, right?). We've seriously considered homeschooling simply because a public school classroom is SO difficult for him to cope with.

Thank you so much this is such a relief!!!!!! We just got diagnosed last week, but I have known since he was a year old that something was different. I would doubt myself with the good days and feel alone since others didn't get it. I thought maybe I just sucked at dealing with his issues, but am so glad I am not alone!!! All 10 of these couldn't be more accurate and provide me with so much comfort.

So very true all of it I have a son who is autistic and non verbal your post was just what I needed this morning as im trying to get him up for school no easy task thank you so much we autism moms all need to be encouraged and reminded just what a blessing our special needs kids are and how very blessed we are to have them praying for all my sisters out there

Did you read my mind?? Thank you. So many days I feel crazy or like I'm not gonna make it with our 4 yr old SPD kiddo. I just keep going holding onto Gods grace and mercy. Thank you for writing this. Deeply felt it in my heart. ❤️

My child was given to me for a reason... Thank you so much for that! She is such a gift, and, you are right, it is very apparent on the good days. The bad days make me crazy and I forget. She was given to me for a reason. Your entire post described everything I have been going through and thinking. Thank you!

I am not really new to SPD my son who is now 16 struggles with it, however his SPD, made its apperence in ways that were more manageable, he was mostly withdrawn and quiet most of the time, somehow I made it through with really good OT's and lots of educating myself, but here I am 16 years later, I am now 40 and have adopted an amazing, funny, gorgeous little miracle, I adopted him from the foster care system when he was only 8 months old and he had a lot of medical problems and HUGE feeding issues, but oh my, he was an answer to a prayer that I wanted to much I was afraid to even wish for, to be a Momma again. I adopted him knowing the risk he had a TON of drug exposure, but I guess I thought maybe given all his medical stuff God would spare us the other stuff?? This make me horrible I am sure, it feels so wrong to have that thought, what makes us special right?? But there it is.... almost three years later.. So the past couple of months things have gone down hill FAST, normal tantrums have turned into what I call " thermonuclear tantrums" somedays feel like one lonf tantrum with moments of eerie calm. I kept telling myself it is not SPD it cannot be, not both kids and not this bad right??? Because just as you said above some days are not so bad and some days are down right great.. so maybe I am crazy?? Maybe I need to be more patient! But the other day we got a new OT and she tried a pressure vest on him, I knew what it was I knew why she wanted to put him in it, but I could not be prepared for his reaction... CALM... FOCUSED...he asked to take it home... but I know its not the end all be all answer, but I felt liked it sealed our fate. So now I can feel it coming, sensory diet, pressure vest, GOD FORBID that damn brushing program!!! ANd I feel so guilty for being mad, feeling cheated somehow, did I not pay my "dues" already, I walked this path already ,it was hard but this is harder, this SPD is a different monster than I dealt with before, this monster is ANGRY, and frustrated and tired... I could go on and on.. and hiding in the closet for a good cry is one of the best ideas I have heard in a while.... thank you for your story it reminded me that I am not crazy , well not a lot anyway, and that although I feel VERY alone right now I am not... thank you again..... Amanda

Thank you so much for posting this! Our son was diagnosed with spd almost three years ago and there have been many, many long, difficult days, too and wish I'd seen your post back then! It probably would've saved me getting so many grey hair! Lol! Even today, encouraged me (after one of those I'm about to pull my hair out days!!!!)! We've been through a lot of "specialists" and therapies, too. Some helpful, some not so much...but we're having some great results with incorporating a specific sensory diet a few times a day (depending on the day...) based on ot designed for sensory issues. Ours is called high arousal sensory diet (has a hard time ordering and settling down) and the purpose is to train the brain/ body to regulate itself and in turn teach our kiddos to recognize what their body is telling them so they can adjust to their environment in helpful and healthy ways. I'd be happy to get more information if anyone is interested. While this may not be the answer for every kiddo, I hope it's encouraging other moms to keep working to find what works for their precious ones! :-) We also found eliminating sugar (including all sweeteners and honey), dyes and grains (except rice) with some herbal calming doses have helped our son tremendously. I totally agree with everything in your post....so thanks again for posting! Us spd moms are not alone! :-)

Both my children have SPD, our 4yrs daughter was diagnosed two years ago. Our son, 7yrs old, was diagnosed with SPD and Asperger's at age 4. Now we are looking into OCD. He behaves well at school but is a mess after school, so wild and cannot settle down. He still lacks social skills which the school refuses to see as a real problems since they are focused on academic and behavior problems. He goes to two different speech therapy groups outside of school for social skills. Trying different meds to clam him down so after school activities are not a problem. We also eliminated the dyes and sugar from their diets. Both kids have Celiac Disease so we are gluten free. Its a real challenge to deal with two kids having this, we have lost friends, gotten negative comments from family members about their behaviors. We cannot attend certain events because the noise level and lights bother them. Taking long trips is hard and eating out can be difficult. Thanks for the post, it helps to know we are not alone.

I'm not sure what I'd add to your list. Maybe: take care of yourself. I know, easier said than done. "Give yourself a time-out; apologize to each other; blah blah blah" but it's true. Physically removing yourself and doing something with others or getting a spa treatment-- all this is important to recharge those batteries. I personally know how hard it is when you get NO help and CAN'T get away. You break and snap and say things that you pray will be erased from our little one's memory.

This made me cry. It sums up exactly how I have been feeling. Maybe I am crazy, I must be a bad mom, this is my fault, or I'm making it up. Lots of self blame and misunderstanding from people around me, including my family. It is nice to hear that how I am feeling right now is normal and someone else understands what I am going through. Thank you.

Thank you, I needed to read this tonight. It's been difficult with my son lately and I've felt like the worst mom because some days are just hard. My son was recently diagnosed with SPD and my insurance won't cover OT, and I'm at a loss some days in how to handle him.

I found this post on Pinterest and I just want to cry. No one who gets it is within a 200 mile radius of me and it's so isolating. My husband doesn't even get it. He supports me, but he doesn't see what I see- he's not with our daughter 24/7 because he has to go to work. It's isolating and exhausting.

I found this post on Pinterest & was wondering if anyone's child has SPD & autism? Any relation between the two? My son is 2 1/2 and has been doing an early start Autism intervention program & we are currently waiting for a referral to a psychiatrist but all these comments sound like my child & I've never heard of SPD before this post. Thanks for any info or advice.

I've wondered for years if my son has SPD but none of the doctors and therapists that we've gone to take me seriously. He's 17 now, though I knew there was something different about him since he was 2, and we're hoping he'll graduate this year. Luckily I've found more info lately, especially your blog, that will help me navigate this crazy ride and point is in the right direction so my guy can have a happy life. Thanks for sharing your struggles.

Thanks. My four year old is recently diagnosed and suddenly it all makes so much sense. Still, you can see people doubting, or trying to act like he's autistic. He's not -- none of the signs are present except SPD.

My two year old was just diagnosed with SPD. He is also not talking (like at all, he regressed) and I have so many days where I beat myself up. Was I too busy finishing college to notice I wasn't teaching him what he needed to know? Am I too young? Should I not have gotten pregnant with another baby so fast? I ask myself these questions almost daily. My son is in speech and OT and early intervention through the county that we live in. I needed to hear this today. I needed to be reminded that I am doing my best, that my husband is doing his best, and that we have never knowingly given J anything but love and security. You're so right, God does not make any mistakes. He knew what child we needed and he knew what parents our son needed. Thank you so much for the reminder <3

Had another hard week with my 4 year old son and after reading more about spd there's a lot that resonates with his struggles. I nearly cried reading your post, it's beautifully written and offers so much support and insight for someone like me who's at the start of this journey. Got an appointment to try and get another paediatrician referral this week so praying someone finally listens....xx

I cried reading this . It was like you were talking about me and my child!! Those were my emotions u felt, and that was my child always having major meltdowns.. It's a relief to know I'm not alone!! Thank u so much for writing this for others to see, and especially for wearing your heart on your sleeve! I needed to hear what u said!! Thank you.

Thank you so much for this! It's taken us almost 3 years to get past the "Am I crazy? Maybe we're just bad parents." phase. My 7 year old son was just diagnosed with SPD a few weeks ago and we have his OT evaluation next week. Now I'm stuck between being excited to finally get some help and being terrified that they'll say he's fine and we're imagining everything. And the mom guilt... oh my.

Thank you. This truly touched me. My 5 year old little man, was diagnosed a few months ago. Everything you said was TRUTH. And it is so comforting to know that there are so many of us mama's out there fighting for these kids. Countless times, I have thought it was something I did or that when his symptoms are not rip roaring...that I am crazy. God bless you for all you do and your soothing words.

Thank you so much for writing this! I am in tears as I write this. My 4 year old daughter has not been diagnosed yet, we have an appointment set very soon. It was so interesting to read what you said about doubting ourselves, as I stumbled upon information on SPD when I was researching ADHD. SPD seems to fit but I keep questioning myself over and over and I have thought "am I making this up?" We have so many people who get frustrated with my daughter, I get frustrated too but I also know the amazing heart my daughter has, the light that she radiates and the love that she spreads to everyone who is willing to see past the tantrums, the loud noises, and her oh so fast feet. I hope and pray that through this I can find how to help my daughter. And along the way find friends who understand and can see the good in my daughter too.

I can't tank you enough for saying the words that I couldn't find! I sat at my desk and cried reading where you talk about your daughter and her spirit and how amazing she is.....I know, because I feel the same way about my daughter!! There are those times she acting unreasonable and screaming about something or throwing things and arguing with me, and then there are the times when we are quiet, and she lets me squeeze her tight and I see how brave she is and how brilliantly her mind works!! She possesses so many qualities that I don't, and I admire her spirit and love her beyond measure!! That is what keeps us going!!!

I loved this so much! My daughter hasn't been diagnosed with SPD yet, but I'm trying to get her into the Dr asap. I have twin girls and they are So unbelievably different from each other. I started noticing things were especially different for one when we went to Disneyland. She had such a hard time handling everything while her sister had a blast. She'd have So many meltdowns about the smallest things, and was completely unreasonable until I could calm her down. They're 2 years old, and she still uses a pacifier, and carries her blanket everywhere, but I've come to notice how important they are to help calm her. I dread every time I have to go grocery shopping, because no matter what she has a meltdown. And she has a very high pitched scream she let's out. I get the dirtiest looks from people in the store, it makes me feel like the worst patent even though I haven't actually done anything wrong. I remember leaving in tears a few times. This has really helped me feel so much better! I relate so much to everything you've said!